The UK Kawasaki Disease Foundation
Societi is a Registered Charity in England and Wales (1173755)
Kawasaki Disease is the leading cause of acquired heart disease in children in the UK. It's time we changed that....
...together we will
Societi & KSSG - Keeping you up-to-date
Welcome to the KSSG Members page! Thank you for checking it out! In discussion with Sue and Nicky we thought it would be useful for KSSG members to have a way of being kept updated with Societi progress - in between the periodic newsletters and other information we publish. So we have created this KSSG Members page on which Rachael will write an informal update specifically for KSSG members with information that might be of interest to families.
If you fill in a contact form and tick the box on the form for updates, you'll join our mailing list and we'll be able to email you whenever we update this page.
8 July 2017 Update - What an amazing few weeks....
I think the last time I updated this page we were just about to launch our awareness video at the fantastic SKY headquarters, thanks to Neeta and her brilliant planning for the most incredible awareness raising opportunity yet (Neeta, you are the best!)
I can't really begin to put into words how fabulous that day was. We prepped and planned for a couple of weeks, determined to make it a success.... Neeta asked us to create a bespoke newsletter for her, with content she shaped, which we did - and had 250 copies printed for the day. We also brought forward the planned printing of our new TEMPERS postcard so that we could take this to London and give it its first proper outing! We took 750 copies, knowing we'd leave some with Neeta for sharing at SKY offices later too. You'll all be familiar with our GP A6 symptoms leaflet, and several hundred of those made the journey with us too - along with a few hundred lots of chocs and sweets...Societi newsletters, our information posters, display banners - and more besides.
We shared cute little Societi notebooks and cards too, as special reminders of the Kawasaki conversations we had with so many brilliant and truly generous people.
Our highlight of course was the video launch. The SKY COO Chris Stylianou was incredibly generous with his time, whilst we planned the event and it's publicity, on the day and afterwards too as SKY have continued the incredible support for Kawasaki Disease awareness, including showing the Societi video and giving out information this week at a national Leadership conference to over 100 SKY executives. How utterly brilliant is that? I know Neeta has created avenues within her business left, right and centre too for sharing Kawasaki Disease information with colleagues - not just in the UK but across Europe. An incredible commitment - incredible impact, from a simply brilliant woman. It's been our privilege to support Neeta in her company awareness raising work, and delighted that we're sharing at scale our message.
SKY top bosses (who know a thing or two about media impact, let's face it!!) told us on the day that our messaging was very strong, high impact and clear. Just what we need it to be. We've got a lot of people to tell....!
And from London to Scotland! We took Societi information for Kawasaki Conversations on a road trip - sharing with partners at CEIS Group in Glasgow, Heriot Watt University in Edinburgh, New Start Highland in Inverness and Cope Ltd in Lerwick, Shetland! What a week. And it couldn't have ended better, at the other end of the UK with an absolutely fabulous donation to Societi and fundraising support from Somerset.
In between times (what spare time?!) we've done quite a bit of work on our website. We are growing the content all the time and improving it, always checking it with our Scientific Advisory Board. We NEVER include clinical content without checking, and as you know, we don't give medical advice as an organisation. Just information, checked by experts, where we can.
So what's ahead? For me? A few days holiday...then reenergised in August (though Sue says I'd be dangerous with more energy...!) were hoping to start the process to recruit a social media intern for three months. We want to do some analysis of where we've been (750 tweets as of Friday....nearly all of which are since January!) and learn what we can, before we press on to the next level. We've a couple of merchandising plans developing, some awareness campaign ideas being developed too - so there is lots to keep pushing forward on. Our major projects too need weekly effort, films, clinical trial, parent resource and e-learning module - so there is lots going on!
If you want to get involved in fundraising, (because without funds we can't keep moving forward....) please, please do get in touch and we can help with materials and ideas too. With your support we can - and will - do more. The number of people who are getting involved and regularly supporting us both in terms of funding and in awareness raising with Societi materials is growing all the time - we value every single bit of support. It ALL means such a lot. Thank you. TOGETHER we'll make a massive difference and a louder collective voice for Kawasaki Disease.
That change in awareness we need, which we've been talking about? It's underway! Let's give it even more pace - together.
Rachael, for Societi
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We've moved our KSSG blog archive!
You'll find it here.